We rang the bell that means We’re Well!
It’s the glorious hospital tradition for children who’ve finally conquered a critical illness and can return home. Now read the heartwarming stories of youngsters who say...
HeARING that your child has a serious illness is a nightmare for any parent. Months, even years, of hospital appointments and intensive treatment may follow, the anxiety and fear seemingly never-ending.
But for those who respond well, the end Of Treatment Bell is a huge symbolic moment. It was introduced to UK hospitals in 2013 and now more and more children — and adults — are choosing to ring the bell to sound that their treatment has ended and normal life can begin again. JILL FOSTeR spoke to five families who have rung that bell…
ALYSSA LOVED IT WHEN WE CHEERED
Helen ellis, 35, is a hospital rota co-ordinator. she lives with daughter Alyssa, five, in Chertsey, surrey. Helen says: The moment I heard the words ‘Alyssa has leukaemia’ in August 2016, everything became a blur. I could see the doctor’s mouth moving and hear her speaking but everything else in the room seemed to vanish. I couldn’t take it in.
I’d suspected something was wrong for months. Alyssa had been lethargic and had lots of coughs and colds. But one morning, I’d tried to get her up for nursery and she pleaded to stay in bed.
I knew this wasn’t right for a three-year- old and took her to A&e. Only a few hours later a blood test revealed she had acute lymphoblastic leukaemia, a cancer of the blood cells.
Alyssa started chemotherapy days later. holding her down when she was having painful procedures was the hardest part for me. Once we both ended up on the floor, sobbing. eventually, Alyssa realised she had to do it.
She’d say: ‘Mummy, remember it’s OK for me to scream and shout as long as I stay still.’
Living only two minutes from the hospital and a mile from Alyssa’s school meant she was able to attend classes when she felt well enough between treatments.
Alyssa underwent two-and-a-half years of treatment and she finished on December 20, 2018. For Christmas we were able to spend a week in a lovely cabin in the New Forest, provided by the charity Momentum. It was very special.
We’d seen the Treatment Bell in the hospital lots of times and Alyssa rang it on January 23 this year. She loved being surrounded by staff and family giving her a big cheer. So she should. She did all the hard work.
Afterwards we had an end Of Treatment party at her school and raised £900 for charity. It has been a long journey, but we consider ourselves lucky. Many families would love to be able to ring the end Of Treatment Bell and never get the chance.
IT WAS THE END OF A SCARY JOURNEY
lisA MilwArd, 31, is a fulltime mother to rogan, eight. she lives with him and her other children aged 14 and two in whitstable, Kent. lisa says: WheN Rogan first fell ill at the age of two, I didn’t really worry about it. I thought it was just a cold and kept dosing him up with Calpol.
But one morning when I went to wake him, he had sores on his mouth, bruises all over his body and a rash on his stomach. I was horrified. The ambulance arrived and what followed were the worst 24 hours of my life.
Rogan had so many tests. he was so poorly and kept drifting in an out of consciousness and I kept asking ‘is he going to live?’ but no one could tell me anything.
Next day, when they said he had leukaemia, I went into complete denial. I couldn’t accept that my child, who had seemed healthy and lively just a few weeks earlier, could suddenly have cancer.
Watching your baby go through treatment is horrible. When they put a canula in his hand he was screaming: ‘Mummy, don’t let them hurt me!’ but you have to let the nurses and doctors do their job. The staff at the Royal Marsden were brilliant.
Three years of treatment ensued, which is perfectly normal for leukaemia. But he was so strong and brave. When you first get to the hospital and know nothing about cancer, you see the Treatment Bell and wonder what it is. Then you wonder if your child will ever get to ring it. People kept saying the journey would get easier but there’s always a part of you that thinks your child is going
to die. When we finally did get to ring it, it was just me, Rogan and one of the play therapists.
But it was a special moment and signified the end of a very scary journey.’
I WAS FIGHTING TO HOLD BACK TEARS
Henry Bancroft, four, lives with mum Vicky, 28, an afterschool club leader, father James, 32, an auditor, and sisters Millie, nine, and Sophia, five, in Watford. Vicky says: HenRy was born in May 2015 and we suspected something was wrong as soon as he arrived weighing only 5lb 15oz. We had expected him to be heavier.
He was losing blood in his nappies but as a young mum, my worries were dismissed. I was sent away from A&e on seven occasions. But at five weeks Henry was admitted to hospital for tests.
When he was two months old, they found out he had X-linked Inhibitor of Apoptosis deficiency (XIAP). It has only been diagnosed in 150 people in the world. It affects the skin, blood, digestive and immune systems, so a simple cold can turn into pneumonia. Only a bone marrow transplant can help rebuild the immune system, but finding a donor can be very difficult.
In March 2016, Henry was admitted to Great Ormond Street Hospital with an infection and we ended up there for 11 months. I stayed with him while my husband and my parents looked after our daughters.
It was incredibly stressful and upsetting. Saying goodbye on Sundays was so traumatic. Millie would scream and grab the door frame, not wanting to leave her mummy.
But my little boy needed me more. Without a transplant we knew Henry would die — and, incredibly, a 21-year- old man in Germany was a match and agreed to donate his bone marrow.
We were lucky — and I am forever grateful to this altruistic, brave young man. you can wait a long time to find a donor and we found one in weeks.
But there was a rough ride ahead. The transplant had to be postponed when Henry fell dangerously ill. After the transplant he suffered yet another serious setback. At one point the doctors said there wasn’t much more they could do. James and I even discussed getting married in the hospital because we wanted Henry to be there and didn’t know how much time we had left. But, incredibly, our little boy fought back.
Henry rang the bell on January 31, 2017. I recorded the moment and you can hear me trying to hold back the tears. Henry loved the attention from all the nurses and couldn’t stop smiling.
Henry’s room had been right next to the bell and for months I’d watched other children ringing it and leaving the wards.
I felt happy for them and their families but part of me had wondered: ‘When will it be our turn?’
NOW POPPY’S LIFE CAN BEGIN AGAIN
Vicky Bland, 43, is a full-time mother. She lives in Walton-onthames, Surrey, with her partner Simon, 40, who works for a timber company, and daughters Mia, eight, and Poppy, four. Vicky says: POPPy was a really inquisitive, active toddler who hated sitting in a pushchair. But shortly after her second birthday in november 2016, we noticed a change. She had a cough that refused to go, she was vomiting every day and very tired.
Our GP eventually referred us for blood tests. I was at the cinema the next day when I got a call from the hospital saying I had to bring Poppy in immediately. I just knew it was cancer.
Poppy spent an awful few hours having more tests. She was terrified and so little. I remember her looking at me as if to say: ‘Why are you letting them do this to me?’
She had a blood transfusion and we were taken to Great Ormond Street Hospital, where a consultant confirmed that it was acute lymphoblastic leukaemia.
She started treatment that very day and at first we were in hospital solidly for eight weeks. Her hair fell out, which was awful to see, but she coped with it brilliantly.
About three months into the treatment, I told the hospital I was struggling with my stress and mental health. Rainbow Trust Children’s Charity provided us with nicki, a family support worker, who was incredible.
Rather than Poppy and me having to face a two-hour taxi journey to the hospital, nicki would pick us up from home. She was always there for us, no matter what. Friends were wonderful too. They set up a rota and helped us with Mia before and after school. We’ve only recently rung The Treatment Bell — on June 12 this year. It marked the end of a journey. It was like shouting out: ‘This is the end! I’m on my way to start my life again!’
MONTY RANG BELL FOR HIS BROTHER
rHian oSBorne, 47, is an osteopath. She lives with husband richard, 52, a bookkeeper, and sons ruben, 11, and Monty, six, in Warminster, Wiltshire. rhian says: RICHARd and I were devastated when we lost our son Orlando in 2011 to neuroblastoma, a cancer that forms in nerve tissue. He was 14 months old.
Three years later when our youngest boy Monty, then three, fell ill, we never suspected this terrible disease could strike our family again.
A cold just wouldn’t go away. Antibiotics didn’t work, the GP thought it must be a virus and blood tests were inconclusive. Six months later we were referred to an ear, nose and throat specialist who, because of our family history, decided to do a scan.
When the oncologist said ‘he’s got cancer’ I couldn’t process it. I kept thinking ‘why us again?’ We were told he had a 92 per cent chance of survival — but Orlando had been given a 90 per cent chance.
Monty was diagnosed with a type of cancer called Burkitt lymphoma, which affects the lymph glands and blood cells.
‘Suddenly our life was on hold again — but Monty was so brave.
I’d been traumatised by the experience of sleeping in the wards beside Orlando, so this time Richard did the night shifts and I stayed with Monty during the day.
Thankfully, he responded well to treatment and rang the bell in October 2016. He didn’t really understand what the bell was about — but for the rest of us it meant so much, as Orlando had never got to ring his bell.’
www.rainbowtrust.org.uk; www.moment-um.org to folloW Henry’s story, visit www.facebook.com/ HenrysXiaPjourney/ to help fund vital research, go to www.ourbraveknight.co.uk